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21 - 1.5 Years Later - How life has changed

I'm bloody doing it, I'm typing. I wasn't sure if I would blog again but here I am, moving my little fingers and hitting those big alphabet keys. I wonder what I'm going to say? I haven't planned a blog, I'm not sure I even have anything to say but that's the power of blogging, I surprise myself with words.


My last blog was posted over a year ago and it was only a couple of weeks after Mum died. I had to re-read it, I couldn't remember what I said or even how I was feeling. How strange is that? This paragraph stood out to me:


As you can imagine, things have been difficult since then and I have experienced many emotions. I will write a blog about this because my reaction has been nothing like I imagined. I thought I was prepared, I thought I had already grieved enough given I lost mum way before she died. I was wrong. I will also explain the deterioration and symptoms we saw in mum before the very end. I was definitely curious before I knew, and I assume others in this situation will be, too.

You know, I think this is why I haven't posted. I don't want to blog about my grief, explain the deterioration, or think back to those incomprehensible symptoms. I'm a different person now with a different mindset and I don't want to be back in that headspace. Is that odd? Does it mean I still have healing to do and I'm afraid to look back? Or does it mean I'm healed enough and understand that no good comes from looking back? I really don't know.


Another strange thing is that I'm not sure I know how to look back. I've had to scroll through my camera roll to give me some indication of how I felt. These pictures were taken on 30th May 2022, 21 days before she died. I had a call to say she was shutting down and that I should come and say goodbye. Whatever possessed me to take pictures of a dying woman and her crying daughter? I think I was holding on, trying to cherish every last moment and capture everything I could.




She didn't die though, and a few days later I did the very natural thing (cough) of jetting off to Portugal and Ibiza. Look how much fun we had:



WHAT THE F*CK. I forgot this happened and felt a lot of shame when I saw the pictures. It feels hypocritical knowing I'm about to speak of pain but sharing simultaneous happy memories. I remember questioning whether I should go on this trip, Mum was receiving end-of-life care and there was a very high chance she would die when I was away. I convinced myself:


  • It's too hard to predict the date

  • We've had so many scares lately, I actually think she's going to live forever

  • She wouldn't want me to miss out

  • She won't know I'm there anyway (ouch - that hurt to write)

  • Maybe the distraction is what I need


At the time, it felt like the right decision and I suppose it was, given she survived the trip. In between checking messages and regular calls home, I even managed to have a good time. I am finding it so difficult to justify though, but that's because I know how special her last day was. I can't comprehend not being there and knowing what I know now, I wouldn't have taken the risk.


In Blog 14, I spoke about Mum's symptoms but to my surprise, the post dates back to November 2020. There were another 20 months of deterioration but not a great deal of change. Here's a snapshot of Mum in the last 6 months:


  • Speech: No change since November 2020, still completely mute.

  • Communication: All communication stopped, she even stopped drawing pictures of ice cream cones which was her signature piece (again, blog 14 if that doesn't make sense!).

  • Mobility: Completely immobile and could only get around in a wheelchair. Getting in/out of the chair was still difficult but she was heavily supported by family and carers.

  • Mental capacity: Full deterioration and unable to respond to... anything really.

  • Food/Drink Consumption: Very volatile. She would eat (only if food was placed in front of her) but sometimes went days at a time without food or drink. Before she died, it was 10 days without food. I didn't know that was possible! Another thing - when she was eating, how did she know to put food in her mouth? HOW?


Disclaimer - Everything you've read above was written on 18th October 2023. At this point, I went into a weird funk and questioned why anyone would want to read a depressing blog about a dead woman. Since then I've received a few messages from lovely readers and it reminded me why I started this and why people are interested. Anyway, it's 4th January 2024 now, let's continue!


The day she died is one I will never forget, for both heartbreaking and heartwarming reasons. The biggest shock was when I arrived at the care home after receiving 'the call'. She was lying flat in her bed and I thought she had already died when I entered the room. I ran straight back out, unable to process what I saw. Her mouth was open, eyes sunken, skin pale, and body completely still. Pete (Mum's husband) reassured me she was still breathing so I made my way back and eventually, I got over the shock. Other family came to visit and all of us had some time alone to say our goodbyes. Finally, it was just me, Pete, and my 2 brothers, all sitting next to her bedside. I told Mum I would hold her hand and she could go whenever she was ready. We listened to her favourite music and I did exactly that, held her hand until she took her last breath. I have so much comfort from those last few moments, the thought of not having them makes me feel sick. I feel truly blessed this happened after I returned from Ibiza.


Anyway, back to another surprising turn. She died on 20th June and 3 days later, I did the very natural thing (cough) of taking a girls trip to Seville. Again, look how much fun we had:



Truth is, Seville was therapy for me. If you've read blog 12, you'll know I was in Vegas on another girls trip when Mum received her FTD diagnosis. I'm not sure which news was worse, but I do know that being surrounded by these incredible women on both occasions made it bearable. If you're going through or have been through something similar, I hope you've had friends like this to support you. I actually think they might be magic, you know.


Anyway, my camera roll throughout June is just one big rollercoaster. The good old cliché of 'everyone handles shit in different ways' is true. In those 4 weeks I:


  • Went on 2 holidays

  • Lost my mum

  • Cried approx. 7 litres of tears

  • Sold some clothes on Vinted

  • Attended a very fun party

  • Had a Britney moment and cut in a full fringe


Who cares, though? I got through it my way and there are no rules when it comes to grieving, which I certainly did. In between the distractions, I felt nothing but sadness which took me by surprise. I wanted this, it needed to happen, why was I so sad? I even felt disappointed in myself for feeling so down. I heard so many times 'you grieve twice' but I convinced myself death could not, and would not, be any worse than watching my mum slowly deteriorate. Turns out I did grieve twice.


Looking back, the sadness, guilt, tears, anger etc remained strong until the funeral was over (clearly the second type of grief was shorter-lived for me). Of course, I thought and still think of Mum often, but I understand now the end was the beginning of my healing journey. It's been an actual journey, too, figuring out who I am without Mum (and caring responsibilities). I've realised I am so many people - the woman on the IVF journey, the shareholder/director of a successful firm, the woman learning to play piano, the woman who likes to travel, the wife, the step-mum, the woman trying to find a cure for FTD but most importantly, the woman who isn't defined by FTD. Christ, what an ending.


Don't get me wrong, there's more I could write about:


  • My embryos that are currently sat in the freezer (AKA PGD)

  • Financial and welfare LPA's

  • The trauma around placing Mum in a care home

  • Bruce Willis

  • My brother also testing positive for the C9ORF72 genetic mutation

  • My work with GENFI and UCL etc


The real question is, do I want to? Writing this blog made me realise I'm on a positive trajectory, looking back does me no good. On the other hand, I know these blogs can support others which is something I'm passionate about. What a pickle. For now, I'll leave it open. Who knows, I might feel up to it again in another 15 months!

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